Category Archives: Soma Mukhopadhyay

* A note from Ariane: What follows was the result of a discussion about people who say one thing, but actually do something else. Emma then wrote a list of questions she would like to ask such people to make sure they were genuine.

Emma wrote that she’d like to do some research on “who is faking their love of autistic people.” She proposed that there be a list of questions. This is the list she wrote.

1. Where did you get information about autism?

2. What was your initial reaction after reading (the information)?

3. How many people did you see?
a) Less than ten
b) Less than fifteen
c) Fifteen to thirty
d) More than thirty

4. What will you do if you see a five-year old Autistic person?
a) ask curious questions
b) Advise parents
c) Ignore them as if they are invisible
d) Talk to the child by saying, “Hello”

5. If an Autistic teenager holds (touches) your clothes, what will you do? (No choices)

6. What do you expect to see in an autism classroom?

7. Will you let an Autistic teenager spend the weekend with your family?

8. What present will you buy for an Autistic person?

9. Will you accept if autism is not cured?

10. Did you enjoy the questions?

From Ariane: What struck me as Emma created this list was how so many organizations, therapy centers, schools, treatment facilities and people who have chosen the field of autism as a career and yet do not treat Autistic people with the respect and care one would show others one supposedly “loves.” Any who suggest the conversation that continues to take place regarding autism and our autistic kids is not affecting them, is sadly mistaken.

I asked Emma if I could write a post about her string and she has agreed. Yesterday she told Soma about her string. Emma wrote by pointing to letters on a letter board.

“It is sometimes like a pet, but I don’t have to walk it every day. It does not bother me with noise. It helps me think and I can have secret names for it…”

When Emma was around two she had a mermaid finger puppet that she would hold in one hand and run up and down the hallway leading to our front door. The mermaid had long black hair and she’d watch its hair sway as she ran. Later, Emma began twirling a strand of her own hair. She would twirl it around, but then began putting it in her mouth. The strand would get tangled and knotted and no matter what we did, that strand of hair would escape our attempts to keep it contained. We were advised to always put her hair in a pony tail, or braid it, which we diligently did, but despite our best efforts, the strand would come loose, wrapped around a sticky finger, wound and unwound; no brush or comb could tame it.

Then, one day at a birthday party Emma caught hold of a balloon string, the kind that one uses for wrapping presents with. It was yellow and the balloon had long since popped and been cut away. I kept thinking she wanted the balloon and asked the parent hosting the party if I could take another balloon as Emma’s had popped. But Emma wasn’t interested in the balloon. It was the string she wanted. I was so fixated on the balloon it took several balloons before it dawned on me that the balloon was merely an annoyance and removing it from the beloved string was necessary.

That yellow balloon string was joined by another balloon string, this time blue. Emma would intertwine the two, twist them together and twirl them. This then evolved to packing tape, which Emma would strip down to narrower pieces and then gather a dozen or so up and twirl them about. A few years ago, she began adding brightly colored duct tape to a few of the pieces, thereby binding them together and it became a kind of work of art, constantly changing, growing, evolving.

Now, the packing strips count to over a dozen, some are several feet long, others are shorter, some even less than six inches, but each string is part of a larger whole and when one goes missing, the upset it causes can be terrible. Still, we have come to understand how important the string is. When Emma is writing she wraps it around the other hand, or will place it in her lap, or sometimes will even set it down on the table next to her left hand. But it is always close by. We have come to see that this is Emma’s version of a stim, or as Emma has described it, “self-care”.

Yesterday Emma wrote about her string with Soma and I once again marveled at her creative and inventive mind. I have come to see it as a thing of beauty, ever-changing, a metamorphic reminder of life, attachment, movement, and the never-ending dance we are engaged in with ourselves and each other.

A collection of balloon strings

The string with masking tape. A precursor to the colorful duct tape that would follow.

Many people are baffled when they meet Emma and hear her speak. Their confusion increases when they read things she has written, like ‘this‘, ‘this‘ and ‘this‘. How is this possible? How is it that someone like my daughter can speak, but not accurately answer the question, “how old are you?” Yet, hand her a laminated number board and she has no problem pointing to the number one, followed by the number two. Give Emma a laptop computer and she will be able to type in the password, as well as type the name of an artist to find her favorite youtube videos, but ask her what she thinks about the Emily Dickinson poem #656 that begins with “I started Early – Took my Dog – And visited the Sea” and she will say nothing in response. Yet, when I hold her qwerty keyboard that’s connected to her iPad, she immediately wrote, “You taste the ocean, but feel man’s pursuit.”

Emma wrote, “I can tell my totally impish body – Can you please sit still – and then it will do something different.” Is this similar to the thoughts and ideas that she is able to write, but cannot speak?

In Soma Mukhopadhyay‘s newest book, Developing Motor Skills for Autism using Rapid Prompting Method she writes, “Autism is not just difficulty in verbal interaction; it is also difficulty in tactile as well as kinesthetic interaction…” “Because of that, an Autistic person may not be able to adapt to new clothes, eat new food, or learn new movements, even though he may have perfect understanding about them.” My copy arrived the day before Emma and I got on the airplane to come back out to Texas for another of Soma’s four-day camps. I’ve been reading it whenever I have time, and highly recommend it.

One of the things Emma loves doing while out here is to have a skill building session with the lovely Rebecca Cooper every day after her last session with Soma. Rebecca uses the techniques Soma describes in her new book. So, for example, yesterday Rebecca showed Emma how to draw with a colored pencil several boxes, one dark, one light, demonstrating the difference in pressure to obtain such variations and then went on to discuss how light causes shadows. They then drew a picture of a tree with the sun shining to its left, casting a shadow on the ground and along the right side of the tree’s trunk and branches.

As Soma writes, “The idea of writing this book came from a necessity. Working with my own son Tito, I realized how his mind and body were disconnected. As a parent I had two choices – support his physical needs throughout his life or try to do something about it so that his hands that flapped to stimulate kinesthetically also knew how to soap himself in the shower, clean himself, make his bed, fold his own sheets, and assist his thoughts to handwrite independently.”

Yesterday there was some discussion about accepting and rejecting social rules. Asked to talk about the rules she would reject, Emma wrote four that she would prefer were not required and expected of her. When we returned to our hotel we discussed this further and Emma slightly amended what she’d written and added one to the list she’d made during her morning session. I’m guessing there are additions to this list, but these sessions are exhausting and I didn’t want to push for more.

1. “Giving eye contact when I don’t want to.”

2. “Being expected to answer verbally.”

3. “Being happy when I don’t feel up to it.”

4. “Keeping my body still”

5. “Trying to be Temple Grandin”

When Emma wrote “being happy when I don’t feel up to it” Soma asked, “do you feel social pressure to be happy?” Emma wrote, “Don’t you?”

So here’s my question to all of you… if you could change a societal expectation, what would it be?

The Halo Center has published a little pamphlet of Autistic people’s writing. It’s called “Voices” and this year’s issue – “Voices” 2013 edition – is available for purchase ‘here‘. One of Emma’s fabulous folk tales is in it, along with dozens of others. For anyone who is even remotely interested in Soma Mukhopadhyay’s Rapid Prompting Method or RPM, it is a great sample of the writings of a wide range of people of all ages who do not rely on spoken language to communicate, but who write to communicate.

“Butterflies used to be sticky as butter. But they had curiosity.” ~ Emma

I am not going to reprint Emma’s entire story here as I hope some of you will go over and purchase a copy.

Soma and RPM have completely transformed our lives. It is my dream that every school, every educator, every therapist, and all people who are in the field of autism have the opportunity to witness someone like my daughter writing her thoughts on the letter board. Eventually Emma will write on her iPad and computer, but for now she is using a laminated letter board with me, her iPad with the person she sees here and the laminated board, which she even holds herself at times, with Soma.

I asked Emma for her permission to talk about language retrieval issues, and specifically to describe some of what occurred during her first session with Soma last week. She said it was okay for me to do so. I’m incredibly grateful to my daughter for being so generous with what is personal information. She has given me her permission, but to leave it at that, would be wrong. To not acknowledge what this means would be negligent at best. She is unbelievably generous to allow me to share these things. I do not know how many of us would be willing for another to share such personal things about ourselves, and the trust she has bestowed upon me, the trust that I will not betray her… it is something I not only take very seriously, but need to acknowledge. To say I am grateful does not come close to describing the feelings of appreciation and awe my daughter inspires. If all human beings could take a page from Emma, both in her cheerful generosity in giving of herself so that others might benefit and her compassion and willingness to see the best in people, even when so many have said and done cruel things to her, this world would be a far better place for all of us.

I wrote about Emma’s first session with Soma ‘here‘. What I didn’t write about was how after Emma pointed to a letter she was encouraged to say the name of the letter, just as her Proloquo2Go program does on her iPad. She was able to do so without hesitation. But when Soma put the stencil board down and asked Emma to say the next letter of the word she was writing, without pointing to it first, Emma would, more often than not, say a random letter. Soma then picked up the stencil board and again without hesitation, Emma pointed to the correct letter and was able to identify it correctly out loud. After Emma wrote a sentence she was invited to read the sentence aloud, but could not do so. This is a sentence she’d just written, one letter at a time. A sentence she’d created, yet was not able to read. It is not then surprising that Emma is unable to read a random story out loud, even though she is perfectly capable of reading it silently to herself and fully comprehending it. See related post about reading aloud, ‘here‘.

To see this broken down, to witness this at the level of single letter retrieval and not a whole word even, made it all even clearer to me. Which isn’t to say that Emma will never be able to do this. Perhaps at another point, perhaps once she is proficient in writing her thoughts and identifying a letter after pointing to it, one letter at a time, she will then be able to work slowly, patiently and without the anxiety of feeling expectations are being placed on her, perhaps then she will be able to come up with the next letter before she points to it and from there the next word and on it goes until verbal language can catch up to her written. But for now, it is imperative that every single person who comes into contact with my daughter understand how detrimental it is for her to have these expectations placed on her and then to have the inevitable conclusions drawn about her comprehension and ability.

My daughter is nothing short of brilliant. I am not saying this as a biased mother who is basing her thoughts on nothing more than some sort of convoluted tip of the hat to genetics, or a round about way of bolstering my own ego and intellect. I am saying this because I have seen the evidence. Since her diagnosis, Emma has been treated as though she were intellectually impaired when, in fact, she is intellectually gifted. This is, I’m sorry to say, something I am hearing from others. We have a growing population of children and people who are treated as though they are incapable, when in countless cases the opposite is true. The onus is on us to change our current teaching methods and the therapies we are employing and to open our minds to the idea that we have gone about this all wrong. This is what must change.

“Be nice to each other” – this was the final sentence Emma wrote to Soma on Friday before we flew back home. She wrote it in answer to Soma’s question, “Any message to the world? To mankind?”

Be nice to each other.

We returned home late Friday night. I was riding on a cloud of excitement, newly found realizations, solid, unequivocal confirmation and proof that not only is Emma completely aware of her surroundings, but she has profoundly wise insights into the world, other people and herself. She is one brilliant girl. She has managed to learn despite having almost no formal education, she knows her multiplication tables as though she’d been studying them for years. She knows how to solve mathematical word problems, she understands things I have only come to understand very recently and her compassion for others is astonishing. She has been spoken harshly about. She has heard what others have said about her in front of her as though she could not hear or understand. She knows what others think of her, and yet, she understands these things are said in ignorance.

So excited was I, that I slept fitfully, and Saturday morning awoke to blinding, crushing, devastating sadness. I felt the weight, the enormity of my daughter’s life and my role in all that has happened to her these past nine years since she was diagnosed. My mind latched on to each and every misstep, the mistakes piled up so quickly, one on top of the other I felt I couldn’t breathe. I spent Saturday in a state of crisis. I completely broke down. And the thought that continued to blast in my mind was, “How will I ever find my way out? How can I forgive myself for what I’ve done? How does one forgive another who has made the decisions I’ve made? In essence, how can you forgive what is unforgivable? And yet, she has. And therefore, so must I.

Be nice to each other.

And here is the thing about all of this. Berating myself, hating myself, NOT forgiving myself allows me to continue the cycle. It wears me down, threatens to break me when I need to be strong. But I also know that when I am overwhelmed with feelings, telling myself that I must not feel the things I am feeling, does not make them go away. Tamping the feelings down, pretending they do not exist, none of that actually helps me move through them. Criticizing myself for hating myself does not make me hate any less. And so I accepted that this was where I was. And for one day I sat with all those awful, painful feelings and felt them. Neither pushing them away or adding to them by criticizing myself for having them. I sat with them one excruciating hour after the next and allowed them to be. And all the while I repeated Emma’s words, Be nice to each other. And I allowed that to include myself. By Sunday morning I felt my strength returning. I felt that old determination returning. I could feel energy flowing and I knew. I knew. As long as Emma gives me permission to, I will tell all who will listen, at least some of what she is writing.

When I asked Emma yesterday if I could write today’s post using her words as the title she nodded her head, yes, and smiled. Last night before going to sleep she said, “Mommy? No school tomorrow? I don’t like new school.” And so I promised her, I promised I would do everything in my power to help her school understand, but I know I have one hell of a battle before me. And I need every ounce of strength I’ve got in me. But maybe, just maybe some of the video clips I have of Emma writing these things will have the power to change even a few minds so that they will be swayed and will come to understand what I have. Not only is my daughter capable, she has a great deal to teach us, but all of that will be lost if we are not willing to open our minds and listen. This is the non autistic limitation of our neurology. This is our neurological deficit and we will have to work mightily to change that.

Rhyming words, poetry, fables, history, science, multiplication, math word problems… these are the things Soma has covered with Emma over the last three days. Emma went from pointing to one letter at a time, to writing out several words and even whole sentences describing profound thoughts, insights, doubts and concerns, and I sat there witnessing this outpouring of words, this torrent of letters that, when added up, evoked emotion and identification and concern and understanding. The power of language. The power of communication. There is tremendous power in both.

This has been a profound few days; transformative, exhilarating and exhausting. I have watched my daughter work and she has worked very, very hard. I have watched her and I have marveled at her and been dismayed by her and astonished with her. I have laughed and wept and listened and listened and listened some more. She has said things that have provoked more questions than answers, but she is here, very much rooted in this world and not, as many suggest or seem to think, somewhere else, off in her own “little world”.

I cannot write about anything specific this morning, I’m too tired and Emma has said she is too. We have two more sessions today with Soma and then we head home. We are lucky. We are incredibly fortunate that we’ve had the means to do this, to come here, to stay for the week so that Emma could work with Soma. All the young children Soma has worked with over the years, so many of them are now writing books, and are at an age where they are publishing their hard-won words; there are too many to ignore. They are communicating on letter boards and iPads and keyboards, an unbelievable output of thoughts, ideas and opinions. “I want to be able to talk,” Emma wrote yesterday. And maybe, just maybe one day she will be able to talk the way she writes, but until then we will keep providing her with every available resource we can find so that she has a better chance of achieving that goal.

Emma gave me permission to blog about some of our day yesterday. I asked her, “Is there anything you typed that you do not want me to write about?” She typed, “No.” So… here goes…

We are in Texas to work with Soma Mukhopadhyay. I’ve written about Soma many times before, ‘here‘, ‘here‘, ‘here‘ and ‘here‘. By the way, Tito, Soma’s son (who is non-speaking and autistic) is the author of several books. I highly recommend all of them.

Soma began the session using a stencil board and having Em point to the letter she wanted with a pencil, then took the pencil, wrote the letter down, handed the pencil back, and on they went. By the afternoon session Em was pointing to the first letter and then the next and the next, spelling out whole words and even several words before Soma wrote all the letters down. As the sessions are all being videotaped, the stencil board is by far the best thing to use, as it is clear when you are watching the tape, which letters Em is pointing to, where as a laminated letter board, or a keyboard would be more difficult to see as clearly. Soma does not touch the person she is working with. There is no physical contact of any kind, unless initiated by the other person.

Some people have accused Soma of manipulating the stencil board. I have watched Soma work with my daughter many times, as well as with other students and beyond the natural slight movement that occurs when holding an object with one hand, I have witnessed no manipulation of any kind. With Emma she used a full alphabet stencil board, so even if one wanted to somehow make her point to a particular letter this would be impossible without physically touching her.

They began discussing the weather and Em wrote that she likes it when it is windy. Soma asked her to tell her anything at all about windy weather and Em wrote, “flying leaves”. They then discussed temperature, how heat rises, the sun, and finally Soma asked her for the name of any state. Emma wrote, “Colorado”. Soma asked her why she chose Colorado and I smiled knowingly, believing that I knew the answer and expecting her to write something about how this is where her Granma lives and where we go to visit several times a year. But Emma had something else in mind. She went for the letter “b” and then wrote “Boulder”.

Okay, I thought. Boulder, that’s kind of weird. Richard’s best friend lives in Boulder, maybe she’s thinking about Steve. Meanwhile Soma asked, “What happened there?” And Emma wrote, “flood”. And I sat there stunned. You see, we are not a family that ever turns on the television unless it’s for a pre-recorded show or to watch a dvd. We do not listen to the radio. We no longer have the NYTimes delivered to our house as both Richard and I receive it online and read the news from our iPads. Neither Richard nor I spoke (that we can remember) about the devastation that occurred because of the flooding in Boulder recently. And yet, there is absolutely no doubt that others have and did discuss the floods in Emma’s presence, though it’s doubtful anyone spoke to her about them and yet here she was, writing about the floods.

The afternoon session began with Emma choosing “story” from a choice between “story” and “number”. Soma proceeded to tell a fable about a crane and a fox who were friends. The fox invited the crane over for dinner and prepared meat for the crane which was almost impossible for the crane to pick up with his beak and the fox watched with great delight as the meat fell from his beak over and over. Soma talked about how the fox was having fun, but mean fun and throughout all of this asked Emma clarifying questions about various words, all of which Emma knew without hesitation. But the fox underestimated his friend the crane, Soma continued. She then asked Emma what she thought about the word underestimated and Emma wrote, “less expectation”. The story continued with the crane being polite and asking the fox to come over the next day for dinner at the crane’s house where upon the crane served the fox soup in a jar that the fox could not drink, except to lick the sides. Soma then asked Emma for the moral of the story and Emma wrote, “do unto others”.

Soma used Emma’s interest (anxiety?) about the time and how long the session was going to last, to discuss time and the calendar year and then asked Em “how would you like to be treated by others?” Emma wrote, “I want to disappear when people talk about me.” Soma asked a clarifying question about situations that she was specifically referring to and asked if Emma felt that way when people said nice things. Emma said, “no”.

Later, using a laminated “yes” or “no” card that Rosemary Crossley uses and gave us, I asked Em more about this. It came out that people are “mean” to her on the school bus. I asked her if people were mean to her at school and she wrote, “No.”

Today we go back for Emma’s next two sessions with Soma. As they say in the 12-step rooms – more will be revealed. I cannot write about how I feel, other than to say, Soma is doing amazing work. She has been doing this work for close to two decades, everyday for hours at a time. I am learning a great deal, but will I be able to replicate what she is doing? No. I won’t. Not yet, anyway and I don’t expect to, but I can get better with practice and I can apply what I see Soma doing with other things I’ve learned that Emma has responded to. But more than anything else, I can continue to stretch my limited mind and limited thinking, (my neurological deficits) and practice, continue to practice expanding my knee jerk “truths” until one day perhaps I will no longer feel incredulous at what I continue to witness, not only with Soma, but with a great many people, all of whom have devoted their lives to finding ways for people like my daughter to communicate.

“I want to disappear when people talk about me.”

*I have read this to Emma to make sure what I’ve written is okay to publish. She has given me her permission.

Having had a downright, dreadful experience at our daughter’s ABA based preschool that was publicly funded and had come highly recommended, we were determined not to make the same mistake twice. We found a private school, the only non-ABA based school around at that time and for the next six years she went to it. She was loved, she was well taken care of and she learned almost nothing. It wasn’t that no one tried to teach her, it was that the way she was being taught was not a way she was able to learn. So we hired a private literacy specialist and over the next two years, Emma learned to read and write. But there was a “behavioral” piece to this person’s program that came at a cost. I don’t mean a financial cost, though there was that too, I mean a different sort of cost, the kind you can’t completely assess or gauge until years later. It was the cost that comes with being put into an emotional strait jacket. So, at a certain point, as I learned more about autism from Autistic people I realized we could not continue, despite her terrific gains in learning to read, write and type.

A year ago we found a public school (most no longer adhere to any one methodology, thankfully) where Emma is loved and well taken care of AND is learning. Her teacher is wonderful. The kind of teacher all parents dream of for their child. Loving, patient, kind, observant, respectful, presumes competence of all the children in her class, smart, has a sense of humor and open to anything that may prove helpful in teaching. The sort of teacher who takes time out of a Sunday afternoon to sit in on a session with Soma Mukhopadhyay and Emma and takes notes and then asks to borrow books written by Soma on her method. The sort of teacher who then comes over to our house to do a strategy session and begins to incorporate what she saw and has learned into her teaching. Suddenly Em’s backpack is filled with material from a grade level curriculum she is now doing at school with this amazing teacher. The sort of teacher who seems too good to be true. The sort of teacher you wish you could clone… The sort of teacher who is better than Xanax, Wellbutrin and Prozac without any of the side effects. Except that the school year is almost over and this amazing teacher is leaving to teach somewhere else and Emma is entering middle school, so we must say goodbye to her wonderful school and her incredible teacher.

This morning we toured a middle school. And guess what? It emphasizes the performing arts AND it looks wonderful, with a fantastic sensory gym and a “theatre room” with photos lining the hallways of the children performing their own musical that they wrote and performed in. Could we have created such a place more perfectly suited to Emma? It could be a little closer to where we live, but that would be nit-picky of me. So come this September, Emma will go to yet another school. That’s three different schools in three years. For any kid, that’s a lot of change. For Em, who was such a trooper about her “new” school last September, I am keeping my fingers crossed the transition will be as positive. Anyone have a cloning machine perfected? Because if her current teacher could just be cloned and her head teacher in this newer new school, I’d have no stress at all!

In the meantime, Em will visit her “new” school a couple of times over the summer months. From what we’ve seen so far, we are filled with hope!

Lest you think this post is about stress felt by parents, let me quickly say, it’s not. This post is about the stress I have observed my daughter experiences. The stress she feels and that I (often unwittingly and unknowingly) exacerbate. This is not about beating myself up, but is an honest look at how my reactions can make matters worse. As I’ve said before, it is my hope that as Emma’s mother I continue to make progress in my parenting, but also as a human being. Just as I hope and expect my daughter to learn and progress, I hope the same for myself.

“We have to minimize her stress.” This was something Soma Mukhopadhyay said during Emma’s most recent session with her. It was in answer to my question about when to graduate from using a letter board to a computer keyboard during her RPM (rapid prompting method) sessions. During the session Emma pointed to a letter, then Soma wrote the letter down, Emma pointed to another letter, and on it went until Emma had written an entire sentence. This technique, of one letter pointed to, one letter written down, helps with Emma’s impulsivity, which is amplified when she’s feeling stress. It was during this same session that Emma answered Soma’s question about whether she could feel colors, with, “Of course. That answer, those two words spelled out so easily by my daughter, made me laugh and cry at the same time.

My daughter types and does things that astound me. It doesn’t matter how much I believe in her competence, I am continually astonished, ecstatic and heartbroken all at the same time. Astonished because of the ease and confidence with which she will say something like, “Of course” in answer to a highly complex question, heartbroken because for so long these were words I never imagined I’d hear, let alone learn what I am now learning about her. I no longer believe these feelings are mutually exclusive to each other. Now, instead of wondering whether it was all a dream, I celebrate the exquisite beauty of my child and all she does that constantly reminds me of just how vast and incredible the human mind is. I am humbled, on a daily basis, in the best possible way. I would not trade the awe I get to feel when in the presence of my child for anything. Seeing my daughter defy every limited idea about her that has ever been uttered, including my own thinking, gives me tremendous hope for this world, for my own growth and for humanity.

I witness greatness when I watch her work and it is a beautiful thing. So when she expresses upset, which I now am able to identify as stress, it breaks my heart in a way that it didn’t, before I understood. What I used to think of as stubbornness or a temper tantrum or a form of manipulation, I now see as a product of the enormous stress she feels. And I have to wonder, exactly how much stress must she cope with? I have talked about what I perceived to be her “resistance” in typing, but am now beginning to think of it as less “resistance” and more stress. Stress from how very difficult it is. Stress from expectations, stress from making a mistake, stress from doing something different, and those are just the stresses I can easily come up with and relate to. I’m guessing there are many more I am completely unaware of.

Stress is something that, when she is gripped by it, all systems seem to simultaneously crash. To make matters worse, my stress level rises in direct proportion to hers and I am confronted with how unhelpful I am when I allow my stress to overwhelm me as was the case the other day. My response to Emma’s panic was to panic too. So much so that I could barely breathe. “You have to calm down!” I instructed her, while my own sense of calm, shattered so completely, was a perfect example of what NOT to do. It was the antithesis of modeling behavior sought and it reminded me of something my father used to say to my siblings and me – “Do as I say and not as I do!” I think he thought it amusing, however I remember it as anything but.

There are times I cannot predict, when something happens, things I don’t know or understand, and suddenly my seemingly placid, happy child is in a turmoil of upset. There is often a sensory component I’m unaware of. During these times sentences are repeated that are obviously meaningful to her, but that I find confusing. As her stress escalates, her ability to verbalize what’s going on plummets and my frenzied request that she “type it out” does nothing to alleviate the situation. The longer all of this goes on, the more I feel completely ill-equipped to keep my stress level from going into the red, let alone help her with hers. That Emma seems convinced I am, not only capable of pulling it together, but will be able to help her, is an example of my daughter presuming in my competence, which makes me all the more determined to work through my own issues and do better. I owe it to her.

Yesterday was the last day of Soma Mukhopadhyay‘s 4-day training. I wrote about it ‘here‘, ‘here‘, and ‘here‘. Soma packs an enormous amount of information into four days. She discussed everything from neural pathways of the brain to which parts of the brain are used during specific activities, to how to devise lesson plans and ways to physically position oneself in relation to the student. There were so many surprising moments, but one that I never could have anticipated, was how helpful it was to learn about the actual brain function during moments that are emotionally charged or OCD. Learning some of the basics in brain function demystified a great many things in a way I hadn’t before considered.

Given what we now know, and granted it isn’t much comparatively speaking, but is so much more than we knew even twenty years ago, it is astonishing that certain older therapies continue to be popular and used for autism. Two of the most destructive phrases used with an Autistic person are the dreaded, “Look at me!” and “Use your words!” I cannot list how many times Emma has been instructed to “use your words” only to do so and be ignored. It seems those who say “use your words” really mean, “use the words I want to hear”. Add to that the insistence that an Autistic student have “quiet hands” and not stim because it is believed learning cannot take place while stimming even though by removing the stim no learning can or will take place because we’ve just taken away the one thing that was allowing the student to stay focused and attend, even if it did not “look” that way to us. We non Autistics have a tough time understanding anything or anyone who is vaguely different from ourselves. Before we start calling ourselves “experts” in Autism, we might want to become “experts” in our own neurology first, at least we’d have a better handle on our own limitations and see how those can so easily dovetail into how we are interpreting what we’ve decided is “the truth” about someone else.

I have written about methodologies before on this blog. There are some that I find more troubling than others, but in the end, the thing I care about more than anything else is: is it helping my child? Is she learning? Is she safe? Will the short-term gains be at the cost of long-term pain and even trauma? What is this doing to her self-esteem? Is respectful interaction being modeled? Is she being humiliated, shamed, made to feel badly for the way her brain processes information? Is she being taught by people who believe in her ability to learn? Are her teachers believing her capable and giving her the tools she needs to flourish and be all that she can be? Is she assumed to be competent or is she being forced to prove her competence? Is she being taught the same equation, story, concept and terms over and over? Is she seen as a human being with the same rights as any other person? Would YOU want to be treated the way you are treating and teaching this person?

I don’t care what the methodology is, who created it or how many people believe in its efficacy, if it isn’t taking these questions into account, I am not interested in it. I do not care what others believe, I don’t care what the “experts” say, I don’t care how many letters a person has after their name or who created the methodology or the various papers and/or books the person has written, if the methodology is not attempting to consider these other ideas, I am not interested in it. I, as a parent, am not invested in any particular methodology unlike so many schools. And for that reason I have far more leeway than most schools do, to keep trying different things until we (I’m including my wonderful husband) find the thing or a combination of things that will best help our daughter learn, grow and become all that she can be. In the end that is what we care about more than anything.

This weekend I will create a lesson plan for my daughter with age appropriate materials for next week’s RPM session. I am hoping I will be able to demonstrate, at least some of what I’ve learned, to Emma’s therapist and her teacher. But I also know I will make mistakes, I do not expect that after four days of an intensive training I will do Soma’s method well, but I think I have a fairly good understanding of the basics so that I can start, at least, trying.

It is hard to believe how much information Soma is able to pack into the first three days of a four-day training. She has managed to cover the different learning channels and how to teach toward each one. We learned about the various stages of development, left brain/right brain, the difference between an excitatory stim and a calming stim. The importance of presuming competence, working through self-injury and highly charged emotional situations have all been discussed. We were taught that social expression and gestures begin in the hypothalamus travels down into the body, then back up to the somatosensory cortex, to the pre-motor cortex and finally to the motor cortex and how at any point along the way, things can become disconnected causing the Autistic person tremendous challenges in behaving as we non-autistics might expect. We learned about OCD and how to interrupt it by asking the student to spell a relevant word or introduce numbers and/or a math problem as a way of working with it while at the same time diffusing it.

Soma described how to implement a lesson plan around just about any topic, mental mapping and the different stages of rapid prompting method. We went over methodologies and how to plan a lesson by using flow charts, listing objectives, relevant spelling words and key terms and concepts that need to be introduced, explored and learned. She taught us the importance of teaching concepts, and the words used, as well as reading comprehension, spelling, grammar and such abstract ideas as time, symbolism, relativity, belief systems and throughout all of this Soma emphasized the importance of teaching age appropriate or above age level materials while filling in the gaps of what isn’t yet learned.

I’m exhausted, exhilarated, but exhausted and there’s still one day to go! Today, the final day of the training, we are going to cover how to teach math and math goals, how to take and administer a test, how to teach poetry, literature and creative writing and the training will end in a review aka test. Tests have always been my downfall when I was in school. I become anxious and overly nervous. When I was in high school I learned to over study and even then I would become easily overwhelmed if I didn’t know the answer to a question and would get so upset that even the questions I could answer would go unanswered because I couldn’t move on from the one I didn’t know. Writing all of this makes me aware of how similar my daughter is to me in this regard. She also becomes fixated and upset when she gets an answer wrong. She too has trouble moving on to the next question or topic, can become dis-regulated and overly anxious. I will try to incorporate some of the exercises Soma has taught to see if I can interrupt my obsessive thinking if and when it happens. So much of what Soma teaches could be used for anyone, even me! I could write a lesson plan around that…

I’m halfway through a four-day training with Soma and I have filled more than half a legal sized notepad with notes. Yesterday we covered Mental Mapping/ the different stages of RPM and Implementation. I told Soma about my encounter with the child who didn’t want to work and immediately hit themselves. I described how I’d had them spell “hitting” on the letter board and how this had immediately diffused the situation. Soma then gave me more terrific suggestions on how to devise a lesson plan around an action such as hitting. An example of this is (I”m making this up) “I would like to know more about hitting. What else can you hit? Do you hit the sky or a ball?” Soma spoke of how when emotions are running high, switching to numbers and math, which have no emotion can be helpful during emotional outbursts. “How many times can you hit the ball? Here let’s count. 1, 2, 3, 4, 5. You hit 5 times and if you hit once more, that would be 87 times or 6 times?”

We spent a great deal of time discussing the ways in which one can learn about a student through their preferences, stims, what they’ve been exposed to, skill levels and abilities, tolerance levels, acquired knowledge and defenses. Soma then covered how one goes about implementing all of this through lesson plans. Each step of the way one presumes competence in the student’s ability to learn and be taught without presuming that they already know how to read, write, add and subtract. Through the various activities it quickly becomes clear whether the student needs to be shown how to spell a word such as “hitting” or whether they already know the word. On the first day one of the students, whom Soma had never met before, sat down and after working with her for fifteen minutes or so, was asked what his favorite color was. She had him choose from one of two stencil boards for the first letter. From that board he chose the letter “r”. He then proceeded to type ‘r’, ‘e’, ‘d’. The following day a number of the people taking the training expressed skepticism that the student actually could read or write. One suggested that red may not have been his favorite color.

When asked how they knew that he couldn’t read or write, they weren’t able to give specific reasons, it seems many just assumed he could not. It reminded me of the years and years I spent believing a whole variety of things about my own child, which turned out to be untrue. I had no proof that the things I thought were actually true, I had just assumed and then behaved toward her as though it were fact. Perhaps one of the single most destructive things we can do to our children, students, the people we meet is to make assumptions about their intelligence and abilities. Beliefs based in nothing other than unfounded assumptions and our own biases of those who look or seem to us as not being capable. These assumptions are dangerous and can do real harm. As I’ve said before ~ to presume competence and be wrong will do no harm, to presume incompetence and be wrong can and will do tremendous damage.

I am taking a four-day training that Soma Mukhopadhyay is giving this week. Yesterday was the first day and Soma covered the stages of development and different learning styles. Throughout the entire day Soma demonstrated how one teaches while presuming competence, though she never said those two words or even mentioned this, it is, in fact, what she was doing. She does not assume a person she’s never met will know how to read or write, but she does presume that the person can and will learn regardless of whether they speak or not. Rapid Prompt Method teaches skills that create a strong foundation for all learning to take place.

Soma walked us through stims that are excitatory and calming and how to tell the difference. She demonstrated how one can work with them and how they give us clues about whether the person is auditory, visual, tactile and kinesthetic. I asked a great many questions about things such as, what do you do when the person you’re working with hits, bites, slaps or pinches themselves or you. Later after the training had ended I had the opportunity to work with someone who almost immediately hit themselves in the chest and they shouted, “No hitting!” Fresh from the day’s training, I grabbed a letter board and said, “Oh here. Spell hitting.” I held the letter board out and shoved a pencil in their hand. Immediately they stopped hitting themselves and pointing to first the ‘h’ then the ‘i’ and so on until they’d spelled “hitting” at which point they were able and willing to move on to do some other things.

Afterwards I reflected on what had just happened and remembered something else Soma did when one of the children she was working with tried to bite her. I am paraphrasing as I didn’t write down exactly what she said. In a very calm, matter of fact voice, she said something like ~ Oh you’re trying to bite my arm. My arm is not lunch. What else can you bite? No judgment, no scolding, shaming or anger, there was nothing in her voice to suggest she was speaking of anything out of the ordinary or that this was something to get upset about.

For years I have been baffled by how to respond or even if one should respond to such actions. I have written about “self-injurious” actions ‘here‘, ‘here‘ and ‘here‘. I’ve never completely known how to respond and have responded in a variety of different ways, but today… today was the first day I saw someone model a response in an academic setting that made sense to me. It isn’t that this response will eradicate the need or desire to hit or bite, but it was the first time I’ve seen someone respond in a way that didn’t make it worse, either by scolding, shaming or reinforcing. As was the case this afternoon, the child I was with, immediately stopped hitting themselves and we were able to get back to work without further comment.